Since my December 2, 2005 Non-Hodgkin Lymphoma diagnosis, I've been on a slow-motion journey of survivorship. Chemo wiped out my aggressive disease in May, 2006, but an indolent variety is still lurking. I had my thyroid removed due to papillary thyroid cancer in 2011, and was diagnosed with recurrent thyroid cancer in 2017. Join me for a survivor's reflections on life, death, faith, politics, the Bible and everything else. DISCLAIMER: I’m not a doctor, so don't look here for medical advice.

Friday, July 27, 2012

The last time I visited Dr. Lerner, my oncologist, he consulted my thick file, as usual. Yet, as I answered his questions, I noticed he was doing something a little different: he was entering notes directly into a computer terminal. When I asked him about it, he confirmed what I suspected to be true: that his office is in the process of transitioning to an automated record-keeping system.

He didn’t sound 100% happy about it, but let it be known this is something “they” are insisting on. Who “they” are wasn’t entirely clear: maybe our local hospitals, the insurance companies, the pharmaceutical companies, the State – or perhaps all of the above. He did grudgingly admit it will result in more accurate transmission of information – even though it means a big adjustment for him, his colleagues and their office staff. I imagine the transition period is especially trying.

Now, I don’t know how much of the information entered into the new system is narrative, and how much numeric. Whatever the ratio, it should help solve one of the traditional problems with doctors’ record-keeping: poor handwriting.

I have no way of knowing whether the new procedures will cut down on the sort of mangling of the English language evident in the following examples, culled from actual medical charts. This item’s been circulating on the Internet for some time, but I still find it amusing. Hope it makes you smile, too:

1. She has no rigors or shaking chills, but her husband states she was very hot in bed last night.

2. Patient has chest pain if she lies on her left side for over a year.

3. On the second day the knee was better, and on the third day it disappeared.

4. The patient is tearful and crying constantly. She also appears to be depressed.

Saturday, July 21, 2012

“A cancer diagnosis inevitably raises the question, ‘How long will I live?’ I don’t ask myself that question anymore. Now the question is, ‘How can I live well?’ I strive every day to feel good, laugh, and maybe cry, to connect to others, and to make a difference. I learned this from others who have been on the cancer journey. Cancer is an illness that binds us together, and we can all help each other to live well by sharing our stories.”

I like Lori’s outlook, and certainly resonate with the things she says about stages she’s passed through on her long-term journey of survivorship. At the beginning, in those dreadful days right after diagnosis, fears of suffering and dying loom large. But then, as treatment possibilities present themselves and we settle first into the short-term routines of chemotherapy, and later into a longer view, we survivors come to see that life with cancer is very much worth living. If we’re fortunate, we may even come to discover how hard-earned lessons we’ve learned along the way can be of value to others. We learn, as the patriarch Abraham learned of old, that in the midst of it all we are, in some unaccountable way, “blessed to be a blessing” (Genesis 12:2).

One of the most important early learnings for Lori had to do with reclaiming a sense of control over her own life, that she had feared for a time the disease had stolen from her: “The attitude that I was an active participant in my own healthcare gave me a sense of control, which is one of the first things to disappear with the word ‘cancer.’”

To anyone just beginning the cancer journey, I’d want to say something like this:

Right now, your life is understandably in turmoil and fears loom large, but be prepared for this disease to teach you patience, as you discover you’ve embarked on a journey of survivorship that will last the rest of your life. The urgency of this present crisis will dissipate, and you’ll learn new disciplines and rhythms of living. In time, baring your arm for a blood test or stretching yourself out, arms over your head, for a CT-scan will become familiar motions lodged in your body-memory. You’ll find joy in unexpected places: not only, as the culture believes, in days of robust health, but smilingly emerging from the mists of malaise. Surprising companions will greet you along the way, offering you priceless gifts that can never be hoarded, but only grow richer in the sharing. If you are so blessed as to enter remission, you’ll uncover a new meaning of that word: how the greater Power that guides your life has “re-missioned” you, placing you again and again in situations where sharing your story is the greatest gift you can offer another person. Most of all, you’ll learn that life, even a life with cancer, is to be lived – not only wisely and with foresight, but also boldly, with spontaneous generosity and an appetite for divine revelation.

From the Christian perspective, I continue to find the well-known words of the poet W.H. Auden, from his 1944 “Christmas Oratorio” in For the Time Being, to be an inspiration:

He is the Way.Follow him into the Land of Unlikeness.You will meet strange beasts, and have unique adventures.

He is the Truth.Seek him in the Kingdom of Anxiety.You will come to a great City, that has expected your return for years.

He is the Life.Love him in the World of the Flesh,And at your marriage all its occasions will dance for joy.

Thursday, July 12, 2012

According to a June 14, 2012 Reuters news story (“Number of US cancer survivors to increase by a third by 2022"):“The number of Americans living with cancer will increase by nearly a third to almost 18 million by 2022, according to a report released on Thursday by the American Cancer Society and the National Cancer Institute.

Researchers found that even though the incidence rates of cancer are
decreasing, the number of cancer survivors is on the rise due to a
growing - and aging - U.S. population. The incidence of cancer rises
dramatically with age.

The report concluded that the expanding population of cancer survivors
makes it increasingly important that the medical community understand
their unique healthcare needs.”

While these statistics may sound at first like bad news, they’re
actually not. Two very positive factors influence these numbers.

First, those of us who do have cancer are surviving longer, thanks to
ever-more-effective treatments. The interval between diagnosis and
death is growing greater all the time. For some of us, even though
we’ve been diagnosed with cancer, we’re not dying from it, but from
other causes.

Second, people are living longer in general. Because the chances of
contracting cancer go up with each year of our lives, that means there
are people being diagnosed with cancer today who, in earlier
generations, would never have reached that point, because they would
have been carried off by some other ailment that’s more likely to be
curable today.

Many cancers are a sort of genetic time bomb. Certain genes are
programmed to go haywire when a person hits a certain age. If more of
us are living to that age (whatever it may be) than in earlier
generations, that translates into more cancers.

The emphasis in all these statistics is on the word “living.” More and more of us are living with cancer, not dying from it.

That means survivor issues are going to loom larger in importance for
the medical community. The combination of more-survivable cancers and
longer lifespans in general means a great many of us are journeying
through uncharted territory. Never before have there been so many of us
asking what it means to be a cancer survivor. Never before have there
been more of us living with cancer.

Imagine you have advanced cancer of the eye. If the tumor has grown large, you’ll very likely lose the eye, which is bad enough – but that’s not all. A new option for genetic testing of your tumor reveals, with a very high degree of accuracy, which of two subtypes of ocular melanoma you have. Half of all patients have the first type, and are likely to recover completely. Those unfortunate ones who fall into the other half face a 70-80% likelihood they’ll be dead in five years, from metastases to the liver. This second type of eye cancer is incurable.

According to the Times article, there’s some debate in the medical community over whether doctors ought to offer this testing option at all. Most patients, it seems, have said they would rather not know if they have an incurable disease. And for those who do, learning of the incurable nature of their disorder – so soon after the initial diagnosis – could very well send them into an emotional tailspin from which they may never recover.

“Why would you want that information when we don’t have anything we can do for you?” one oncologist asked. “That is the fundamental question that has caused people to pause.”

It’s not that the test is medically useless. Some doctors point out that, if they can discover the cancer as soon as it jumps to the liver, they may be able to control its spread for a while. Even after it moves on to the lungs or bones, there are further treatments that can slow its inevitable progress, buying even more time and sparing the patient some pain that would come with a faster-moving cancer.

“Would you want a horrible death that is relatively short,” one doctor asks, “or a death that is slower?”

Of course, those who agree to the test and find out they have the curable variety are much relieved, and rejoice at the good news.

I think I'd want to know. I’d want to have as much time as possible to scratch a few more items off my bucket list.

Tuesday, July 10, 2012

There are a great number of helpful websites offering support for those dealing with cancer and their families, but one of the most helpful I've seen is a new site, My Cancer Circle. Cancer patients and/or their caregivers can arrange for a complimentary web page, which gives them a central place from which to disseminate news, coordinate support (such as meals delivery) from family members and friends, etc. It's got calendars, blogging tools and other features to provide a central place for getting the word out and coordinating the efforts of various folks who are trying to help.

It looks to me like the marriage of a project-planning team's intranet site and a cancer blog. Great concept.

If you set up a circle, it's private. Members have to be invited in order to get a login and password.

I've seen other sites that attempt to do something like this, but this one looks like the most full-featured I've seen so far.

Wednesday, July 04, 2012

I’m spending the Fourth of July in Pittsburgh, at the Presbyterian Church (U.S.A.)’s 220th General Assembly, which is meeting all week. Presiding over the General Assembly is an elected Moderator, an officeholder who’s sometimes an ordained minister (a position we sometimes call “teaching elder”) or a lay leader (a “ruling elder”). For the past couple of years, Cynthia Bolbach, a ruling elder from Washington, D.C., has been our Moderator. On Saturday, as planned, she passed the Moderator’s cross and stole to the Rev. Neal Presa, whom this Assembly had just elected as her successor.

Cindy has served the church during a difficult time. At the 2010 General Assembly, the church opened the door just a crack, removing a constitutional provision that barred those in committed same-sex relationships from ordination as deacons, ruling elders or teaching elders. Now it’s up to the ordaining bodies – presbyteries in the case of ministers, or local-church sessions, in the case of ministers – to decide who’s suitable to serve.

Because it’s the Moderator’s job when the Assembly’s not in session – which is most of the time – to travel around the country, even the world, promoting and interpreting what the church is doing, Cindy’s had to deal with more than the usual number of angry Presbyterians who just don’t understand why the national church would allow such a thing.

By all accounts, she’s done a marvelous job. As with no other issue, the question of the ordination of gays and lesbians brings out the worst in some people. Again and again, Cindy has walked into confrontational situations and faced anger, in some cases even outright meanness, with patience and grace.

She’s not walking much any longer. During her moderatorial tenure, Cindy was diagnosed with cancer. She’s not shared the particular type of cancer she has, nor her prognosis – preferrring to keep that information private – but she did let it be known that her swan song here in Pittsburgh is taking place during a round of chemotherapy treatments.

Cindy preached, and presided over the opening session of the Assembly, from a wheelchair. This is something she chose to do. She had a very able Vice-Moderator, the Rev. Landon Whitsitt, who could certainly have carried on in her absence, but it was obviously important to her to finish the job herself. On both days when she was in front of the Assembly, Cindy seemed low on energy, but she fulfilled her role with grace and good humor.

Cindy simply did what people with cancer most want to do. She kept on living.

I don’t think she’ll be much in evidence during the rest of the Assembly. Having passed the mantle to her successor, she may have gone back home to continue her treatments, for all I know. Or, she may be simply taking it easy, conserving her energy for the things she most wants to do.

Whatever the case, whether here in Pittsburgh or back home in Washington, Cindy is surrounded by the prayers of a grateful church. We admire her strength, perseverance and faith.

Sunday, July 01, 2012

Just thought I'd pass along this little item someone sent me on Facebook, which speaks for itself:

"This is my duaghter JoJo. United Health Care dropped her from my group plan in 2009 and gave us no reason. That same year the CEO of UHC-Group made $770,000,000. It would take the average family physician 4,400 years to make the same amount.

Part 1 of "Obama Care" in 2010 saved my daughter's life. It made it illegal for insurance companies to drop people for no reason. She got the brain surgery she needed. United Health Care was ultimately fined $10,000,000....

Yes we can..."

I don't know anything about that CEO who accepted such obscenely large compensation, nor how he sleeps at night. If you met him on a golf course, he'd probably be a likable person. Somehow he must manage to compartmentalize this stuff in his mind, so he doesn't have to face the twisted, self-serving ethics that are deeply embedded in his company's corporate culture.

It's not just an isolated case of corporate wrongdoing. The UHC-Group compensation case may have been the most egregious example of runaway executive compensation in the healthcare industry, but there are plenty more stories like it. It's a systemic issue. And it's the system that needs to be fixed.

As the people of our nation rally the political will to do that, personal stories like this one help.

About Me

I am Pastor of the Point Pleasant Presbyterian Church, a 450-member congregation in Point Pleasant Beach, New Jersey. I also serve as Stated Clerk of the Presbytery of Monmouth - a regional governing body composed of 45 Presbyterian Church (U.S.A.) congregations in central New Jersey. From time to time I teach Presbyterian Polity at Princeton Theological Seminary and Presbyterian Studies at New Brunswick Theological Seminary. I am married to the Rev. Claire Pula, Director of the Bereavement Program, Meridian Hospice. We have two children: Benjamin, a singer-songwriter, and Ania, an artist. I write two blogs: "A Pastor's Cancer Diary," in which I reflect on my ongoing experience as a cancer survivor (Non-Hodgkin Lymphoma, also Thyroid) and "Monmouth Presbytery Clerks' Corner," a place for Clerks of Session and other interested folks with an interest in Presbyterian polity (church government) to gather online.